Shake, Rattle and Roll

Miracle Cures

Miracle Cures
By Terri Reinhart
Copyright © 2008

I was shopping the other day at my favorite natural foods store. We do our best to eat good healthy natural food, of course, all the time. And with the exception of the occasional burger from the fast food restaurant, milkshakes, anything that is chocolate and mmmmm… those jalapeno bites from Arby’s with the red sauce that looks like transmission fluid, I do pretty well. As with everything in life, it is nice to have a balance.

I meandered down one aisle, looking closely at everything and feeling pretty good. I was doing the good mom thing and buying natural organic food. Then I went around a corner and was immediately accosted by an older woman (okay, she was maybe a little bit older than me) offering me samples. Would I like a sample? I asked what the samples were but before she answered, she looked at me closely and asked, “Are you in pain?”

“Uh, no, I’m just moving slowly.”

“But are you in pain?”

Okay, now I figure it’s easier to just explain it right out than to risk any more inquiries. “No, I’m not in pain. I have Parkinson’s disease. I just move slowly.” How could I have known what would happen next?

“Did you know that this is the number one diet supplement for Parkinson’s?” She began. And she went on and on about her product, about which she was obviously very passionate. I learned an awful lot! And after several minutes I was quite ready to believe that it stops pain, cures the common cold, helps hair to grow, makes our bones strong, stops the moodiness of menopause, and helps prevent global warming. She had me hooked. It is fun to listen to anyone who is enthusiastic but a fanatic can be irresistible! It’s very possible that I would have even bought some of her miracle supplement, except for one thing. She was just a little too confident and suggested that I try the sample, walk around the store for ten minutes and then come back to let her know how much better I felt. I had the picture in my mind of the crippled child throwing away his crutches and wondered if I’d rip off my leg braces and dance through the aisles of the store. But no, ten minutes after taking the supplement, I felt no different than I had before. Well, that’s not entirely true. My legs were aching and my speed was approaching that of a geriatric turtle. I was too embarrassed to go back.

Once home, the more reasonable parts of my brain kicked in. How many miracle supplements, remedies, and therapies had I been presented with in the last ten years? I’m actually not knocking them at all. I believe very strongly in natural, wholistic medicine and have often consulted with doctors who practice wholistic medicine. There are so many different products out there that I am more than happy to allow my doctor do the recommending for me. He’s also an M.D. so I know he’ll understand my prescription medicines and how things might interact, too. Letting him be the expert makes less work for me and is ultimately less expensive. As with any medicines, what works for one person doesn’t always work for others. Even at best, it can take time to find what’s right. When we do find something that works well for us, it’s tempting for us to become the fanatical salesperson telling about our wonderful miracle cure-all.

Here are my magic remedies:

1. Hot baths. I am a firm believer that there is nothing that isn’t helped by a hot bath. If need be, you can even take three or four in a day. The only side effect is wrinkly fingers and toes.

2. Naps. I’m up to two a day. When my body says go to sleep, I say “Sure, why not.”

3. P.G. Wodehouse. Having my husband read passages out of Wodehouse’s novels can be nearly as good as the meds. But it has to be my husband reading them! It’s not just the words, you see. It’s his presentation. As I said before, an enthusiast is fun to listen to, a fanatic is irresistible!

4. Chocolate. This is best when shared with my 14 year old daughter.

5. Late conversations with my son. And it doesn’t matter what we are talking about.

6. Going out to the coffee shop with my good friend. I’m not going to divulge his name. I don’t want him to be suddenly deluged with invitations for coffee. He’s hyper enough as it is. But he makes me laugh and even if I forget to take my meds, I will be symptom free for another couple of hours.

7. Diet pop. I know, those who promote natural healthy foods will say that diet pop is poison. But in reasonable doses and shared with a dear friend, there is therapeutic value.

8. And last but not least, those jalapeno bites from Arby’s. Don't forget the transmisson fluid.

I’ll tell you what. Try one of these remedies. Walk around for ten minutes and then come back and let me know how much better you feel.

Davis Phinney Celebrates His Biggest Victory through DBS

Check out Sports Illustrated's story by Austin Murphy entitled: Davis Phinney Celebrates His Biggest Win (so far) at: http://www.sportsillustrated.com/2008/writers/austin_murphy/04/28/phinney/index.html

Related Links: Phinney hits last step of Parkinson's surgical relief plan The Associated Press Published: April 26, 2008 http://www.iht.com/articles/ap/2008/04/25/sports/CYC-Phinney-Surgery.php

Message from the Folks at the Parkinson's Unity Walk

The rain cleared away and the sun came up just in time to welcome thousands of people into Central Park for the 14th Parkinson's Unity Walk last Saturday, April 26. The weather was beautiful all day, and the experience was more than humbling for everyone there!

As many of you know, we webcast this event Live from Central Park! Beginning in 2-3 weeks, the webcast will be available on our website to view all year. You will hear from walkers, sponsors, PD organizations, and will get to see the entire program! So, if you were unable to participate in the Walk, or would like to be a part of it again, please check out our website, www.unitywalk.org, to enjoy the webcast all year long!

One man tells his Parkinson's Fight, and Efforts to make the disease history. He hopes to step closer to a cure by helping us spread awareness. Jerry Tully, a producer for ABC news magazines, joined us on Saturday at the Walk, and put together this great article:

Stepping Closer to a Parkinson's Cure
http://abcnews.go.com/Health/MindMoodNews/story?id=4728498&page=1

Please continue to help us as we continue to find a cause and cure for Parkinson's disease. Share this article with your family and friends, and remember, donations for the 2008 Parkinson's Unity Walk will be accepted until June 1, 2008.

From everyone here at the Parkinson's Unity Walk, we are all in this together.

All the Best,

Stacie Mishler
Event Director
Parkinson's Unity Walk
866-789-9255 (866-PUW-WALK)
staciem@unitywalk.org

Maya Pinpoints My Perspective on Parkinson’s

Maya Ellis is a 12 year old middle school student in Boulder, Colorado. She chose to study Parkinson’s Disease for her class project because her great uncle has it, and she wanted to know more about it. In her free time, she studies for her Bat Mitzvah, plays soccer and the piano.

1. What is it like to live with Parkinson’s disease (PD)?

Life with PD is unpredictable. I never know for sure when and if the medication will be working. Life with PD can be embarrassing, particularly with difficulty walking and talking. Feelings of isolation and being different often set in.

2. Can PD be misdiagnosed?

PD is frequently misdiagnosed. My neurologist had to rule out Essential Tremor, brain tumor, Lou Gehrig’s disease and Wilson’s disease before considering PD. A Movement Disorder Specialist (MDS) is a specialist within neurology who is frequently called upon to diagnose PD.

3. What treatments are there for PD?

The traditional treatments for PD are combinations of medications and/or surgery. The gold standard of treatment is the medication, Sinemet. However, over time Sinemet can cause dyskinesia (e.g., those involuntary movements of Michael J. Fox). The most effective surgical treatment to date is Deep Brain Stimulation (DBS). View a clip of Deborah Fryer’s award-winning film, Shaken: Journey into the Mind of a Parkinson’s Patient, at:
http://www.youtube.com/watch?v=QFtgV1vqwiE

I and many others with PD often experience some temporary relief of symptoms through yoga, dance and other forms of exercise as well as massage and acupuncture.

4. What are the side effects of the treatment?

The side effects of taking Sinemet over time include dyskinesia.

The possible adverse effects of DBS include:
Difficulties with speech
Confusion and other cognitive problems
Infection
Weight gain

See more about adverse effects of DBS at:
http://katekelsall.typepad.com/my_weblog/2008/03/adverse-events.html

5. What cause the lack of dopamine?

No one knows for sure, but it’s probably a combination of genetic and environmental factors.

6. How long does the average person live after they are diagnosed?

This is a topic that most of us with PD don’t want to talk or think about. I’ve seen people in their eighties who die several years after being diagnosed with PD (e.g., my mother-in-law) while I know three persons living with PD who were diagnosed 33 years ago.

For more information, see:

http://katekelsall.typepad.com/my_weblog/2007/10/stages-and-prog.html

7. Are there any common misperceptions about PD?

The primary misperceptions about PD include:

• It is an old person’s disease (when 15% of those with PD were diagnosed when they are less than 50-year old). I know a 21-year old with PD.

• The prevalence of PD (it is estimated that 1.5 million people in the US and 6 million people worldwide have PD).

8. What are the most important things to know about PD?

• The primary four symptoms include: tremor, stiffness of muscles, slowness of movement and impaired balance.

• The onset of PD, which is typically subtle and gradual, is most often unilateral, with tremors the most common symptom. However, many people with PD have no tremor.

• There is currently no cure. It is chronic and progressive.

• The symptoms of PD are different in each individual.

• PD will affect you, your family or friends in your lifetime.

9. What interested you in studying PD?

I wouldn’t be studying PD if I personally didn’t have it.

10. Other facts about PD?

• At time of diagnosis of PD, 80% of dopamine cells are damaged, dead or degenerated.

• April is National PD Awareness Month. Please help by spreading the word.

Late Bloomer

Late Bloomer
By Terri Reinhart
Copyright © 2008

I had a disturbing wake-up call today. I went out to do my gardening. I was determined to get the potatoes planted earlier this year to take as much advantage of our growing season as possible. Over the last two years, gardening has been a wonderful therapy for me. I would go out and pick weeds for an hour or more. Granted, if I did heavier work, like shoveling, raking, cutting up the old branches with the saw and bundling them up, or something like that, I knew that I would be worthless later in the day. But, I figured, I could either do the work and feel useless later in the day or not do the work and feel useless all day. I wasn’t going to stop.

I’m still not going to stop gardening, however, it was disturbing to find that I could only turn over about five shovelfuls of soil before having to sit down and rest. After a few minutes, I forced myself to continue on with the work, leaning on my shovel as I walked over to the potatoes. I finished my work between rest stops and, though it took much more time and effort than it ever had before, I was still pleased that I could do it myself. I’m not so useless after all.

It did make me think of the future, though, something I try not to do too much. If gardening is this much harder today, what will it be like next spring? Damn.

At least I can swear about it now!

Through no fault of my own, I didn’t learn how to swear until much later in life. It’s not that I have anything against swearing, it was just not something I was exposed to while I was growing up and when I was, it was like being exposed to a foreign language. I just didn’t get it.

I am sure that at some point my parents knew how to swear. My father was in the Navy during WWII on a small ship in the North Pacific. Swearing certainly must have been a requirement. My mother grew up on a farm. The youngest of ten children, she had five older brothers. What would the chances be of her NOT hearing the more colorful words in our language? But regardless of this, I don’t think I ever heard a swear word uttered in our house. I certainly didn’t learn to swear at St. Anthony’s Catholic school, where I spent my first five years of elementary school.

This can be a bit of a handicap if you find yourself in a sticky situation. Granted, if you are around small children, corporate business associates, clergy (including Catholic school nuns), your grandmother, or anyone else who might be mortally offended by the slightest off color language, you would be prudent to stick with gosh darn golly gee whiz fiddlesticks, and such. But I am alone in my garden, leaning on my shovel, not a young child in sight. Considering how young we were when we married and started our family, and that I worked in early childhood education for most of my adult life, this is the first time I’ve actually had the freedom to not worry about what I say. And I can tell you, gosh darn golly gee whiz fiddlesticks just doesn’t cut it when I allow myself to look too far into my future.

I let loose with a string of obscenities that would have made my male friends proud.

It is interesting to note that, while being an early childhood education teacher prevented me from using certain language, it’s not as if I didn’t hear it. I think I even learned a few new words from the children. Most of them are very innocent, however, and when a young child came to me on the play yard and tattled that another child had said the “F” word to him, I was suddenly wary. I turned to the child and said, “Which F word did he say?” The child looked at me cautiously and whispered in his quietest voice, “He said shut up.” Mr. Baker, who teaches woodwork to the grade school children, lets the students know that he doesn’t tolerate foul language. And the foulest words, in his opinion, are the words, “I can’t”.

Back in the garden, it was strangely uplifting to be able to get angry and yell, not worrying what I said or who might hear me. The earthworms didn’t seem to mind at all and our rabbits didn’t even blush. One of the foxes turned and looked at me suspiciously but I’m used to that. He does it all the time whether I am swearing or singing. Come to think of it, he really looks at me suspiciously when I sing. I’m not that bad, am I?

I don’t know how things will be for me in a year. The only certainty is that it won’t become easier with time. But I still plan to garden. I’m not going to PLAN on what I will NOT be able to do. It’s inevitable that I will look into the future from time to time. It’s not the wisest thing to do but I know that it’s only natural. At those times, I will need to arm myself with all my life coping skills. Swearing is required.

The only foul words I don’t want to ever use are, “I can’t.”

Terri Reinhart is a Denver, Colorado writer. This essay is from her book “I Meant To Do That” and Other Life Coping Skills.

Dancing with Parkinson's Continues to be a Hot Topic

Photo of Kate Kelsall taken by Linda Crist
Costume by Ann Kennedy
Click on photo for larger image

Dancing with Parkinson's continues to be a hot topic. On CBS Evening News on April 15, Katie Couric did a segment featuring Pamela Quinn and dancing with Parkinson's.

See link:

Dancer Stays on Her Toes - Despite Disease
CBS Evening News, April 15, 2008
http://www.cbsnews.com/stories/2008/04/15/eveningnews/main4018728.shtml

Also, Pamela Quinn wrote an article in Dance Magazine in December 2007. See link:

Moving Through Parkinson's
By Pamela Quinn
Dance Magazine, December 2007
http://www.dancemagazine.com/issues/December-2007/Moving-Through-Parkinsons

Related Stories:

Rocking with the Rockyettes
http://katekelsall.typepad.com/my_weblog/2008/03/rocking-with-th.html

Dancing with Parkinson's
http://katekelsall.typepad.com/my_weblog/2008/02/dancing-with-pa.html

In Search of Meaning

In Search of Meaning
By Tom Kelsall
Copyright © 2008

What do a 45-year-old former journalist, a 50-year-old former urban planner, a 53-year old former lawyer, a 47-year-old former technician and a 58-year-old former volunteer coordinator have in common? After 10-15 years of enduring young onset Parkinson’s Disease (PD), these individuals were forced to give up their hard-earned careers, and their dreams of the good life were shot down early.

I am currently eligible for retirement. I can choose to retire when the time is right. PD gives a person no choice. The disease is always in control. There is no right time. I could go on to other jobs in my profession, do different work altogether, do volunteer work or just relax and have fun. PD puts people on disability and shuts down the work world for them forever. Surviving becomes a priority for most PD patients, not working, volunteering or having fun.

My own career has spanned 34 years and continues to energize me. My work has given me a sense of deep satisfaction, enjoyment and a sense of accomplishment in giving back to the community. An employee is rewarded for many years of work and commitment, while disability pays those living with PD not to work. If I had given up my career 15-20 years ago, I would not have felt the same – perhaps less complete and less satisfied in retrospect. A fulfilling career can leave a person feeling very satisfied and victorious. I am blessed that I can still choose my own course in life and not have PD dictate it for me.

Succumbing to PD is equivalent to ending a dream early, leaving a person feeling unfulfilled and defeated. I often wonder about how people living with PD maintain their dignity and self-respect without meaningful employment. I admire their struggle to find meaning and their refusal to accept defeat.

“I Meant To Do That” and Other Life Coping Skills

“I Meant To Do That” and Other Life Coping Skills
By Terri Reinhart
Copyright © 2008

I’ve been quite proud of myself lately. I’m pleased with how I’m handling life and all its ups and downs. I have a good attitude, I tell myself. I don’t wallow in self pity, I try to look at the positives, and I laugh a lot. With family and friends like mine, I truly have no excuse for doing anything else. When life hands me a lemon, I make lemonade and all that stuff. So if I am so good at handling life and all its bumps and bruises, it stands to reason that others might be interested in how I accomplish this monumental task. “How do you stay so positive?” one might ask.

I think the answer is that I love life and everything in it! I try to enjoy every day and accept the bad with the good with grace and good humor. I always have good days. I love everything about this world -except lima beans. And waiting in line at the bank, or… or DRIVING 12 MILES TO THE DOCTOR'S OFFICE TO FIND OUT THAT THEY HAD CANCELLED MY APPOINTMENT! Geez, I hate that! Man…and then having to drive straight to school and hang out till my daughter was ready to come home because there really wasn’t enough time to drive back across town to our house, and not wanting to see anyone on the way because I was just so pissed off that I knew I’d burst into tears if I even looked at anyone.

I just had an awful day. Horrible and nasty from start to finish. Okay, well, nobody died and nothing caught on fire. The kids are safe and the sun still rose this morning. AND I DON’T EVEN CARE!! MY DAY WAS AWFUL, DAMMIT!

I handled everything in my usual calm, cheerful way.

After my missed appointment, I drove to the school, determined that I would make the most of the day by working on my wooden spoon in the woodwork room. The teacher is gracious enough to allow me the time and materials to do some simple projects. I think he wants the students to see just how much THEY know in comparison. I think it works. On my way, I did see one friend. I wasn’t really in shape to be seen by normal human beings, but this being a good friend, he didn’t take one look at me and run in the other direction. He calmly listened to my rant about my day and then looked at me suspiciously, “You’re pissed off at someone so you’re going to make a wooden spoon. Not something I’d think of, myself.”

My woodworking was cut short as I realized that I had forgotten to bring my medication and I began to have a Parkinson's moment. My left hand was now curling into my chest, my right side was collapsing on me over and over, and my right arm (with carving knife in hand) thought it would be best to fly upwards each time I collapsed, in a feeble attempt to help me maintain my balance. Knowing that this "moment" would last till I got home and took my meds, I felt it would be safer to put the knife down and quietly back out of the room.

We arrived home finally, and I listened to my phone messages. Our phone doesn’t beep or blink or do any of those annoying things that tell you that there’s a message waiting. And there it was: the message from my doctor that my appointment had been cancelled. They had called promptly at 8:30 am, while I was taking my daughter to school. Now, the only one I could be pissed off with was me. It didn’t help me regain my humor.

I made it through the evening. We had leftovers for dinner and I decided that my daughter would have to deal with her homework on her own. I secluded myself in my workroom and began to sew my books together. After I finished the third book, I started to feel better. At least I had accomplished something in my day. And when the green thread broke before I was finished sewing and I couldn’t find any color besides pink to finish, I told myself, “I meant to do that.”

That’s what the 6 year old boys always say. After spending 18 years teaching kindergarten, I know it’s always the same. They do something totally insane, like climb to the top of the swing set and then jump down. No matter how they land SOMETHING is going to hurt. With eyes watering and jaw set, they rub their knees, get up slowly, cradle their broken arm, look me in the eye and say, “I meant to do that.” There was something magical about this. Somehow, it made everything okay. This is what they WANTED to do and if something got a little hurt in the process, well, those things happened. Rub the knees, get up, sniffle a bit and run to play. (Unless their arm is really broken.)

Tomorrow I will go back to the doctor for my appointment. And I will remember to check my messages. I will stay away from lima beans and I won’t go to the bank. And if by chance, they cancel my doctor’s appointment and I don’t get the message, I will drive out there anyway, give everyone my greetings and visit the new thrift store that opened up across the street. And if anyone asks, I’ll just look them in the eye and say, “I meant to do that."

See Terri's other story, Bumping into Life.

"One Half-Hour Later in Newfoundland"

When I lived in Canada from 1972 to 1986, I always chuckled when I heard the phrase on television “one half-hour later in Newfoundland.”

The Canadian Broadcasting Corporation tries to broadcast shows nationally at the same time (a movie will play at eight p.m. everywhere in Canada), although this is not always possible. It has never succeeded in doing so for Newfoundland, however, and hence every advertisement for a nationally broadcast show must end with the catch-phrase "one half-hour later in Newfoundland."

Newfoundland has a time zone one half-hour out of sync with the rest of Canada, and most of the rest of the world. Being on Parkinson’s (PD) time is like being on Newfoundland time – out of sync with the rest of the world.

Everything is slower with my body on PD time. Getting out of bed, taking a shower, putting on my clothes and make-up, eating, brushing my teeth, walking, talking, and even thinking sometimes move at a snail’s pace.

I used to pride myself on being a prompt and efficient person. No stopping and smelling the roses for me during my pre-PD days. Brian, a colleague, once said to me, “Kate, you’re such an instant person,” and I thought he was paying me a compliment. And last year when I attended my 40th high school reunion, former classmates inquired if my flying fingers still typed 99 wpm on a Selectric typewriter like I did in 1967.

The clichéd, tired and overused joke in Canada is that "the world will end at midnight - 12:30 in Newfoundland." Despite what the docs say that “you won’t die from PD only with it,” this is the one race in my life where I will finish early.

I’ve always been competitive, but this is ridiculous.

Related Link about Newfoundland Time:

http://wwp.greenwichmeantime.com/time-zone/north-america/canada/newfoundland/

Dr. Curt Freed Responds to Nature Medicine Articles

Dr. Curt Freed Responds:

There were three articles published in Nature Medicine. Two said that some of the transplanted cells had deposits of protein similar to those seen in Parkinson's but that the transplants still seemed to function. The third said that the transplanted cells looked normal 14 years after transplant.

My group has seen no deterioration in dopamine neurons up to 14 years after transplant. Therefore, I think these articles are worth noting, but the authors had no reason to say that the transplants had "caught" Parkinson's from the patient. I am writing a letter to the editor of Nature Medicine saying that.

Let's look on the positive side. What would a kidney or liver transplant look like 14-16 years after transplant in a patient who did not receive immunosuppression (fetal cell transplant patients do not need immunosuppression). The kidney or liver would have been destroyed. These three Nature Medicine papers and our transplant patients show that dopamine cell transplants survive and function indefinitely without immunosuppression.

Curt R. Freed, MD
Professor and Head
Division of Clinical Pharmacology and Toxicology
Director, Neurotransplantation Program for Parkinson's Disease
University of Colorado School of Medicine
Denver, Colorado

Related Links.
http://www.newswise.com/p/articles/view/539402/

I’m Not Foolin’

April 1, 2008
Click on image to enlarge

April is recognized as Parkinson’s Awareness month. This April, join thousands of others in the Parkinson's community in advocating, educating and bringing awareness to the existence and reality of Parkinson’s Disease (PD).

Here are some suggestions to increase PD awareness:

1. Purchase the book, Proud Hands.

Sponsored by Teva Neuroscience, and distributed by the American Parkinson Disease Association (APDA), Proud Hands is filled with personal photos and stories from people across the nation (including me!) sharing messages of hope and encouragement. The coffee table book is a unique collection from people with diverse backgrounds and ages.

Show your proud hands, and join us in celebrating these daily victories by ordering your copy today!

All proceeds from the sale of this book go directly to the APDA to support research, people living with PD, their caregivers and Parkinson's education.

2. Purchase the award-winning film, Shaken: Journey into the Mind of a Parkinson’s Patient.

3. Purchase the Awkward Dance CD by Charlie Nimovitz. Charlie is a singer, songwriter, and musician living with PD.

4. Participate in, sponsor a walker or make a donation to the Parkinson’s Unity Walk in Central Park in New York City on April 26, 2008.

5. Participate in, sponsor a walker/runner or make a donation to the Steps to the Cure 5K sponsored by the Parkinson Foundation of the Heartland in Overland Park, Kansas on May 18, 2008.

6. Participate in, sponsor a walker/runner or make a donation to the Shake, Rattle & Stroll sponsored by the Parkinson Association of the Rockies in Denver, Colorado on June 15, 2008.

7. While this suggestion won't cost you any money, it is the most difficult task for me personally in spreading awareness about PD: Inform one person a day during the month of April about your experiences living with PD.